Coats' disease: Child’s vision suddenly affected by rare condition

Family finds comfort, advanced treatment at the WVU Eye Institute

lulla-with-​ Dr-Ghorayeb
 Dr.  Ghassan Ghorayeb with Antonio Lulla

When nine-year-old Antonio Lulla of Toronto, Ohio, went for his regular wellness visit, he failed his eye exam. Just days before, he was passing a football with his father Steve Lulla. Now, the vision in his left eye was gone.

“I’m at work and my wife Crystal calls me hysterical. She says, ‘There’s something wrong with Antonio’s eye. He didn’t pass his eye exam,’” Steve said. “I was confused. ‘What do you mean? We were just passing football on Sunday.’”

Antonio’s ophthalmologist, Kenneth Gainer, MD, a WVU School of Medicine graduate, recommended they see a pediatric ophthalmologist at the WVU Eye Institute to make a diagnosis.

“When he referred us to WVU, there was a comfort factor in the sense that Dr. Gainer went to WVU for medical school. I trusted his judgment,” Steve said. “When we first went to the Eye Institute, there was also an added level of comfort knowing that there was a team of people working on getting to the bottom of it.”

The family met with WVU Medicine pediatric ophthalmologist Geoffrey Bradford, MD, who evaluated Antonio and determined that they would need some time to research a diagnosis.

“It was scary. It was unsettling and confusing,” Steve said. “Up to this point, other than a broken arm, he had been fine. They assured us they would figure out what was going on. And I think at one point, they had two or three different physicians all working on it.”

Antonio was able to see out of his right eye and carry on with most of his normal activities, but the family still had no idea what was going on. “His right eye was compensating to cover for the left eye,” Steve said. “So when both eyes were open, luckily, he didn’t really notice that much of a difference.”

When they returned to the WVU Eye Institute for a follow-up appointment, Antonio was legally blind in his left eye.

“Dr. Bradford told us that it’s one of those things that you study, but you very rarely ever see it in your practice or your career,” Steve said. “So that’s why it kind of took a little bit of time to accurately diagnose it.” After ruling out several other conditions, Antonio was diagnosed with Coats’ disease.

Coats’ disease is a rare eye disorder that usually causes full or partial blindness in one eye due to the abnormal development of blood vessels behind the retina. It’s not a hereditary condition. It usually develops in childhood, and the exact cause of Coats’ disease is unknown.

Bradford referred Antonio to WVU Eye Institute retina specialist Ghassan Ghorayeb, MD. He recommended regular eye injections and laser treatments to cauterize leaking capillaries in Antonio’s eye, reduce swelling of the retina, and hopefully, restore his vision. Once a month, the Lullas travelled to Morgantown for Antonio’s eye injections. They continued this treatment regiment for almost three years. Intermittently between the eye injections, he would also receive laser treatments.

Over the course of his treatment, Antonio and Ghorayeb developed a special bond. “He related his personal life to me, and he treated me as a friend rather than a patient,” Antonio said. “He made me feel a sense of comfort every time we were there.”

“Antonio is an amazing human being and an inspiration,” Dr. Ghorayeb said. “I am likely paraphrasing others by stating that, ‘There is no force greater than the love and courage of a small child fighting a big battle.’”

Ghorayeb knew the family had a two-hour drive to the WVU Eye Institute from Ohio, so he asked if the Lullas would like to continue their care in Morgantown. “Antonio loves Dr. Ghorayeb,” Steve said. “I told Dr. Ghorayeb, ‘He’s comfortable with you. You’re more like a member of the family, so if it isn’t broke don’t try to fix it.’ His eye was progressing well, and we preferred to stay with Dr. Ghorayeb.”

Eventually, the duration of the Antonio’s eye injections decreased to once every six weeks and once every three months. “Instead of 12 eye injections a year, we’re down to four eye injections a year,” Steve said. “His vision has actually returned to 20/20 vision in his left eye.”

“My vision was 20/1200 when I first had my eye exam at WVU, and now, it’s amazing how it went from that to 20/20 vision,” Antonio said.

His ordeal with Coats’ disease and Ghorayeb’s compassion and expertise have left a big impression on Antonio: He would like to become a retina specialist in the future to help other people as Ghorayeb has helped him.

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